I have been in the Special Education game for more than half my life and before reading this book I still didn’t have a great handle of how Auditory Processing Disorder (APD) looks on the day to day. From in high school volunteering in a class with students with intellectual disabilities to then being a TA for four years in several different setting, to being a Mild/Moderate Special Educator the last 14 years, I think the best idea I had of APD, and how that effected my pedagogy was that “telling a student with APD to listen better is like telling a blind person to look harder.” With that ethos I have tried to build in scaffolds and accommodations to help students who may have APD. But my knowledge of it was still limited.
That’s why I bought the book Like Sound Through Water: A mother’s journey through Auditory Processing Disorder by Karen Foli after hearing it referenced by Dr. Ned Halowel I believe, on his podcast Distraction….or maybe his book, Delivered from Distraction.
The memoir is engaging and informative
To cut to the chase, I really enjoyed reading this book. I don’t mean like, “Oh yeah, that was a good book.” I mean like, choosing to read this over the Dan Brown book I was reading at the time.
It is engaging, but also dropping some knowledge so I wanted to keep my pen around to annotate. It was like eating a healthy snack. It tastes good and you feel good because it’s good for you.
This memoir talks about Karen Foli and her husband’s struggles with figuring out what was going on with her child who was not speaking or seeming to hear well. She goes into multiple diagnoses they recieved (i.e. once it was Speech/Language Disorder) treatments her son received, and overall she documents the first five years of different schooling experiences.
Foli skillfully brings in the pathos when documenting the torment of trying to figure out what her son’s challenges were. At one point she laments that it had been three years and she was still trying to figure out why her son didn’t seem to hear well and couldn’t speak at an age-appropriate level.
She eventually started using a computer program named Fast ForWord and they had a lot of success with it. Foli mentions that the systematic way the computer program worked was delivering the supports needed in way that a human being couldn’t. And after some time they started to see effects in her son’s daily living which is amazing!
She also used LiPS, a Lindamood-Bell program that she said worked wonders. I have also seen a Lindamood-Bell program called Seeing Stars work wonders on a student’s fluency at one school I worked at. I need to take a training one day and see what’s cooking.
One of the aspects of her writing that I really enjoyed is how she has an unassuming way of bringing in literary type elements while keeping the narrative going. A show don’t tell way of writing for example: “Emotions filled me, and I laid my fork down on my empty plate. I don’t remember eating any of it. The feelings melted and beat together inside me.” I think this is the type of writing that helped bring me back to the book on a regular basis and made it the non-fiction version of a page-turner.
1) Auditory Processing Disorder is complex
I think one reason I have gone this long in my career without having a great understanding of Auditory Processing Disorder (APD) is because of what Foli lays out when she says early on, “To provide proper diagnosis and treatment of APD, the expert needs the training and knowledge of child psychiatry, audiology, speech-language, pathology, and occupational therapy.” That is a lot that goes into looking at this disability, and that is why Foli had so many years of struggle getting the proper diagnosis and treatment for her son.
2) As professionals we need to be more empathetic and compassionate
Foli describes her feelings upon hearing her son’s first report from a professional by saying, “…sometimes the accuracy made me wince in pain.” This is part of the reason I am reading these types of books, so I can know how the parents are feeling. I try to be empathetic to a certain extent, and honest, but the younger the students are, the more we have to realize that parents may just be coming to terms with the disabilities that their children have and it’s hard. So in IEP meetings, and emails, and everything else, we have to take this into consideration.
Additionally she later talks about how one of the speech language pathologists kept strict professional boundaries and that made Foli feel like she was being objectified. This reminds me of how I try to connect with parents more at the beginning of a meeting, or through email, and not just be so cut and dry like, “Thank you for coming today. The purpose of this meeting is….”. That’s how I naturally act at work, but Foli reminds me that we have to have more compassion and be more human.
3) Some things I learned about Auditory Processing Disorder:
– Jack Katz’ definition of auditory processing is “what we do with what we hear.” Or in other words, making sense of what we hear
– some people have trouble with background noises
– some may have trouble with their speech
– distortions in what they are hearing (i.e. I have seen various students over the years that in a shock repeat to me what they heard and can’t believe I said that, and it turns out they heard something different…I have like 6 or 7 examples from this school year from three students, but I can’t remember them. But it always reminds me that this can be happening in many academic settings and we need to be using best practices to help the students understand what’s going on)
– a person with APD has normal hearing, but the way they process sounds is not
– there is not just one profile that fits people with this disability (i.e. varied strengths and areas of need)
– Example: Instead of hearing “Little Red Riding Hood”, a person with ASD may be hearing, “Ladle Rat Rotten Hut”
– it will sometimes not be diagnosed until a child is like 6 or 7
– ADHD is often comorbid with APD
-Speak slower, not louder. This allows the child time to process
4) The way the father’s sometimes react to disability may be one of the reasons why there is so much divorce within families with children with disabilities
In my experience many students with disabilities I have worked with have a single parent and it’s their mom. I noticed this early on, and then read about the emotional toll having a child with disabilities can have on a family when I read Far From the Tree by Andrew Solomon.
Now reading Like Sound Through Water and seeing how Foli’s husband consistently kept himself willfully ignorant of his son’s challenges and kept saying things were going to be alright, I started to really understand how some of these relationships can dissolve.
At one point Foli said,
“Sometimes at night, I envisioned running away. Getting into my car and just driving.”
It’s a situation where you need a lot of compassion and caring and passion to make it through the hard times, and the dads seem like they may sometimes have a tendency to retreat when they should be going all in. You do that as a dad enough times for enough years, you can’t expect your wife to be okay with that. That’s what I am starting to see may be contributing to all of the passionate single mothers of children with disabilities I have met over the past 18 years.
I don’t know. That’s just an idea I had while reading an anecdote in this book where after the boy Ben did not do well at a school theater thing the husband said, “He did all right.” And the Foli responded, “He didn’t know what the hell he was doing.” That’s a serious discrepancy that has to put some cracks in a marriage.
5) Access to supports is not equal
I am not a social justice warrior, as they are known these days, and I don’t see class and race and all that in everything that goes on as people are increasingly prone to do, but I would be remiss if I didn’t mention that there were several times where Foli mentioned the outside services she was contracting and I could only be left to think, “what happens to the people that don’t have 2,000 USD (in 1990s money) to see a professional and get a software program?”
In the case of the way the ASD manifested itself in Foli’s son, I could only be left to think that if this was happening with a family that didn’t have the monetary resources she had, then their best bet would be at 3 years old or at 5 they would start to get the federally mandated services and end up with the label of Intellectually Disabled, Autism, or maybe an SLD diagnosis, and if lucky they may receive some Speech services every week in a group setting, not individual, as the Speech Language Pathologist works at many schools, has a big caseload and has to maximize their time on campus.
However, there is a point in the book where Foli acknowledges her luck to have this ability to support her child with all types of therapies and what not, and she mentions how guilty and thankful she is at the same time. So I am not trying to get on her case, but just wanted to mention that this was a theme that was on my mind while reading this great book. What happens to the children who don’t get early interventions….how much further could they be if they did?
6) Further things for me to research:
– how does Lindamood-Bell program help with math support?
– what is the difference between ‘expressive and receptive language disorder’ and APD?
– what is Sensory Integration Dysfunction?
– what is Auditory Processing Disorder? Yeah, I need to watch a few more videos and read a couple more articles so I have a good idea what’s cooking. See a couple different perspectives.
– how much does an FM Trainer cost? Do districts in the States pay for those as part of an IEP (i.e. is it hard get that assistive tech?)
It was a great book; you should check it out. Whether you be a parent with a child with any disability and you want to see someone elses path, or if you are a teacher who works with students who have disabilities, I think it would be highly beneficial.